Janet's blog

 And here I am again, in for another bag of blood. Tube travel as storm Eunice rages across London. Tuesday was my first day back on the tube for months. Had an errand to Enfield B and Q this morning (changing a super-looking Fiskars long-pole pruning tool for one that actually has the saw attachment still attached). The electric car seemed steady on the road - probably due to heavy batteries slung in the undercarriage but saw one tree down on a rec (cracked at the base) and one down in the adjoining small wood (cracked at head height) - the boy reported one down in Finsbury Park. Just hoping the slates stay on our roof - we lost one a few months ago and haven't done anything about it yet. Transfusion all went according to plan; Christopher picked me up in the car and we walked the dog amongst storm debris along the Hamstead Heath Extension edge of Wildwood Road. Not normal but much less puffed. No more hospital until Tuesday week! 😀

 This is setting out to be one of those uncertain weeks, although to state a truism, it gets increasingly certain as more of it churns behind in my wake, than lies ahead. Bag of blood yesterday but sample taken immediately afterwards has come back lacking - Hb 85 when trial protocol demands 90 to have treatment today. This was phoned through to me this morning with a request to come in anyway - for a rapid full blood count just in case the Hb has notched up another 5 points and also for repeat cross matching as they've booked me a second bag of blood for tomorrow. This begs a question - I had cross matching done on Tuesday for a Wednesday transfusion - why isn't that good enough for a Friday transfusion? Hospital policy apparently - there has to be a clear 72 hours between cross matching and procedure. Had been starting to think tentatively about going to Devon next week - mistake! If the treatment does go ahead today, it might still be possible, and then I'll have a second...

 Another (anticipated by me) glitch. I've spent the last fortnight being a mix of purposeful, anxious, impatient, cross and knackered. I was anxious that my long and stodgy but purposeful email was a bit over the top and that may have been the case as I didn't get an answer until I chased up a week later. Impatient because I would so like to be able to plan something - a trip to Devon or to meet a friend for a walk. Cross, because I didn't get a reply to the email and so wasn't able to even consider a plan, and because even home-based things are becoming too much - there's so much that needs doing but had to have a sofa day in the wake of treatment - is this the treatment or the general weariness? Knackered because Hb dropping further - 10 minutes gentle bread kneading needed recovery time, never mind trying to spend some time at the allotment. Seed potatoes and onion setts have arrived, spring is beckoning and I don't have the brain or body energy to respond. ...

 The Enhanced Supportive Care Team call came - from a temporary member who is also a community palliative care nurse. We had a good chat - although the last two weeks have not been great, they have been slightly better than the previous two weeks, so I was in better heart, hopeful that a more predictable symptom pattern might emerge that I could live with. She's going to ring again in a couple of weeks to see whether there is any settling down. At Tuesday clinic, haemoglobin (Hb) was down again (97), below normal, although still acceptable for treatment today. Well - that explains the increasing breathlessness and slight palpitations.  Dr M and I had a good talk about where things stand. The scan results from 26 January are in: the 'pararectal deposit' measures up at the same size, although again my perception is that it might have got bigger during the anaemia/transfusion treatment gap then reduced in size after resuming treatment. But it's not bigger, although only tw...

 Haemoglobin was 108 on Tuesday, so up from 103 after the transfusion - take this to mean that the abused bone marrow must have done some work during the short break from treatment - take this as a good sign. Other blood stuff good as well so today's treatment goes ahead. Had a few grim days halfway through after last treatment. Tethered to the loo,  largely too risky to leave the house, dog had to wait on someone else for a walk. All a bit miserable and forces the wrong sort of living in the moment. At clinic on Tuesday, the doctor said he would refer me to the Enhanced Supportive Care Team who are apparently good at helping with symptom management. Three goes at cannulation today before handing me over to Samson who got in on his first try, as usual. Am writing this belatedly and can't remember anything unusual to report about the  session. Chips and mayonnaise for dinner once home - this is now an infusion-day ritual - probably at 180 degrees to what the sensible cance...